In the craziness of figuring out all of my medical treatments, I have forgotten to post Past Inspiration photos every Thursday. This morning as the sun was rising on my way to another appointment, my mom and I passed a snowy field covered with a thick layer of fog. It reminded me of my favorite sunrise in Indonesia. The fog blanketed the forest below where the world’s largest Buddhist Temple, Borobudur, is located (…see if you can spot where it is). On that day the sun rose perfectly at the peak of Mt. Merapi, an active volcano. It was such a peaceful morning, and reminds me that in the midst of countless appointments and treatments, to stay calm and appreciate those brief moments of serenity.
Calling All Bike Riders!!!
For the past 10 years, the Boston Brain Tumor Bike Ride has been a way for me to give thanks for all of the support that I have received since my original diagnosis in 2004. It has also been a way for me to give back and raise funds so that others one day don’t have to go through living with a brain tumor. This year, on our 11th year riding, it is surreal and slightly scary to write that my long-term survival and quality of life depends on advancements in brain tumor research. Finding a “cure” was always an abstract idea for me, but now it is my source of hope, and the source of hope for the hundreds of thousands of others throughout the country and the world who depend on advancements in medical treatments and research. Unfortunately, in the cancer research realm, brain tumors receive relatively little support. That is why it is up to us all to take a grassroots effort, under the umbrella of the National Brain Tumor Society, to raise the funds that are needed for these life-saving medical developments. To do this, we need numbers…we need riders. The more people who ride, the more funds we can raise towards advancing brain tumor research.
This is no longer some abstract goal; the possible treatment advancements are real, and the benefits these advancements can have on countless lives are so important. The hardest part about cancer is the uncertainty. Most of you already know about my experience living with brain cancer through this blog. We have spent the past month narrowing down the possible treatment options, and at every turn there has been uncertainty because of a lack of knowledge…a lack of research.
My doctors are optimistic about my short term prognosis, but the reality of my cancer, and most other brain tumors is that they almost always recur. I will be starting proton therapy and chemo treatment with the hope that it will buy me enough time for new targeted therapies to be developed. Otherwise, in the future I will likely have to undergo surgery and sacrifice movement on my right side, or risk the tumor evolving into a more aggressive form. These medical advancements are only possible if there is enough funding, so from me and all of the other people living with brain cancer, I ask that you join us for the Boston Brain Tumor Ride on May 17, 2015!
If you are in the Boston area:
Join us on May 17, 2015 in Waltham for a fun-filled bike ride around the greater Boston area with family, friends, and hundreds of other riders!
What if I can’t be at the event?
Become part of our team’s virtual riders! Even if you live in other parts of the U.S., or the world, you can still ride too! Last year, to commemorate my 10th year riding, I biked with my friend in Bali on the same day that my family participated in Boston. Together we raised over $10,000! Organize a route with friends in your local neighborhood and city, fundraise along with our entire team, and enjoy the day being part of what I hope will be a worldwide community of family and friends fighting for a cure. I plan to compile the photos of everyone riding, and develop a collage to represent the universal support for those living with brain cancer.
The $500 dollar fundraising minimum is a lot! What if I don’t have a bike? What if I can’t ride the entire route?
Take a deep breathe, and don’t worry. $500 is a lot of money, but if you think about all of your family, friends, and co-workers in your life, a lot of small donations from a large support network can easily help you reach your fundraising goal. If you can’t reach the minimum by yourself, team up with a friend to raise funds under the name of one rider. If you don’t have a bike and want to still participate, I will help write a personal letter to your local bike shop explaining the cause, and ask them to donate the bike to you for the day. While there are set routes at the Boston ride, you can ride however many miles you wish. I will be undergoing chemo and may not be able to ride in May, but I am still going to join as a rider because the most important part of this event is raising funds for brain tumor research, and being part of a wider team and community of people who want to make a difference.
Join Our Team!!!
Click here to go to the “Team Jeremy” page and click “join team”. If you can join us in Waltham, register as a “rider”, and if you can participate from afar, register as a “virtual rider.”
I am confident that the larger our team, the more funds we can raise for brain tumor research. Also, bike riding in the spring with friends and your community is fun! This team gives me hope for a better future, and this ride is a source of hope for thousands of others living with brain cancer. Wherever you are in the world, together we will one day help find a cure.
Since my last medical update, a lot has happened in a short amount of time. I have been writing throughout the past week about what has been going on, so instead of separating it into different blog posts, I have put it all under one post with multiple sections:
- Part 1: Written Wednesday, January 14th after my second opinion meetings at Mass General Hospital.
- Part 2: Written Thursday, January 22nd following my meeting with the adult neuro-oncology group at Dana Farber.
- Part 3: If you don’t want to read about the process and all of the emotions mixed in, this sums up what my treatment plan will be and when it will start.
Part 1: Second Opinions…On Feeling Powerless
In one day I felt like I had all of the cards in my hand. I felt like I was in the driver’s seat in making a decision on what treatment plan to proceed with. The decision I was faced with was scary, and I had no idea how I was going to make it, but what I did not expect was that the opposite scenario…to not have any decision to make…would feel even worse.
I was incredibly lucky to meet with three leading experts for a second opinion at Mass General Hospital (…a privilege I don’t take for granted). I went into these meetings expecting to get more information on both treatment options (i.e. attempting surgery or starting chemo/radiation), so that I could sit down with all of the “facts” and make an informed decision. Instead, after these meetings, it felt like the rug had been pulled up from under my feet.
We first met with the radiation oncologist at MGH’s proton therapy center. I liked the center, the staff’s focus on me as an adult (…rather than directing their attention at my parents), and I liked the doctor I was seeing. This doctor is the co-editor on most of the literature about oligo tumors that I had read, so I was eager to hear his expert opinion. We sat together in a comfortable consult room, and the doctor began with his interpretation of my MRI scans. He believed there is no way of avoiding radiation given the location of the tumor. He explained that my tumor is not a contained mass, but rather more like “salt spread out over a rug”, where the salt is the cancer, and the rug is functional brain tissue. In other words, he believed that the tumor has already infiltrated the motor cortex, and to attempt surgery would require removing a lot of functional areas, causing significant neurological loss. This was incredibly surprising to hear, especially since we were coming into these meetings thinking that the tumor was at the margin of the motor cortex. To say the least…I was shocked.
He told us to wait to talk with the surgeon, so we moved on to the risks of proton therapy, and this was when we finally received some good news. While I had initially been told that radiation would cause cognitive deficits, my doctor explained that because of the location of the tumor, proton therapy would not affect any of the areas of my brain controlling cognitive function. Cognitive function is found in the frontal lobe, and with proton therapy, they can aim the “beams” a certain way so that the protons never reach this area. I asked him how confident he was that I would not have any cognitive side effects, and he said “100%.” I can probably count on one hand the amount of times that I have heard in my life a doctor say something with such certainty.
He continued on with the risks, including hair loss in the area receiving radiation (…that may or may not grow back), some fatigue, and a 1 in 100 chance later down the road in 20-30 years that I may develop secondary cancers. He seemed to be the most worried about the hair loss, but inside I was laughing because after everything I have been through over the past couple of weeks, hair loss was the least of my worries. Following our meeting I felt confused about his opinion on surgery options, but at least more reassured with proton therapy, and the care I would receive at the center.
My parents and I left for our meeting with the neurosurgeon. Many people (including my personal care physician), regard this surgeon as one of the world’s experts on my category of tumor (gliomas) and surgery. Supposedly, he essentially wrote the book, and most of the papers on issues similar to my situation. According to my doctor he is one of only a few people in the country who can perform these types of surgeries, so needless to say, I walked into the room planning to place a lot of weight to his opinion. When we started talking, he didn’t even begin the conversation with surgery, and instead began discussing adjuvant therapy options. For a surgeon to not immediately start talking about surgery options is pretty rare, and for me, it was rather concerning.
We talked about the unusual nature of my seizures; that most of my symptoms have been localized on my upper right side. Given the linear characteristics of my brain’s motor strip in comparison to the tumor, he would usually expect to see symptoms starting from my foot, and gradually moving up to my face. Instead, the symptoms have been skipping my leg. While he couldn’t explain for certain why this was happening, he mentioned it could be a sign that the tumor has already infiltrated the motor strip instead of simply pushing against it.
With that knowledge, I asked him about his views on surgery, and he began the conversation with hesitation. Given my symptoms, the imaging, and his experience with these types of tumors, he felt that it would be highly unlikely to accomplish a successful surgery without sacrificing serious neurological function. He did mention that like in any potential surgery, there may be a small chance that if we operated, everything could hypothetically go well, but that he would be “happily surprised” if that was the case. When talking to someone who may or may not be cutting into my brain, “happily surprised” is not the confidence or goal I am hoping for. He explained that the most likely scenario is that if he performed surgery, he would not be able to remove the whole tumor, and it would still result in serious neurological deficits. Most importantly, he strongly conveyed to us that regardless of the surgery, I would likely need to get radiation and chemotherapy.
Right now the line doctors use to distinguish the grade (or aggressiveness/nature) of gliomas, and particularly oligo brain tumors is starting to blur. Even if he was able to accomplish a complete resection (…with serious functional loss), I could very likely need further therapy. When one of the world’s brain surgery experts spends more time talking about therapy compared to surgery, it usually means surgery is not a realistic option.
Given what the surgeon and radiation oncologist said, it started to become clear that the options I thought I had, were not really there anymore. We met with the oncologist next, and he brought up a recently completed level 1 randomized study in Europe, which demonstrated that using a combination of radiation and chemotherapy, rather than just radiation, provides better outcomes in terms of “disease free survival” (i.e. the amount of time before another recurrence). For those that don’t know (…including me about a week ago), level 1 randomized studies are considered the crème of the crop, and are what doctors use as their basis for determining treatment plans. While I don’t fit in entirely with the group that the study was performed on age-wise, he felt my tumor would respond similarly.
There is still some uncertainty though regarding my responsiveness and outcomes with chemo/radiation. While talking with the surgeon, he brought up the rare molecular make-up of my tumor (particularly the fact that I am missing the IDH1 mutation). While the 1p/19q chromosomal co-deletion is usually the best determinant for responsiveness to chemotherapy and radiation (which I have), having the IDH1 mutation has been linked to even better responsiveness. The surgeon felt that since my tumor is behaving like a classic oligodendroglioma, I likely have a form of the mutation that was not seen in the standard molecular tests that were conducted. While it does not make any difference in terms of treatment decisions, he felt it would be better to run some more advanced sequencing techniques to dot our “I’s” and cross our “t’s” so that we know exactly what we are dealing with. If it does turn out that my tumor is an outlier of an outlier (i.e. doesn’t have the mutation), then we will have to make more decisions on a case by case basis rather than basing them on previous studies.
At the end of the day I was exhausted, went home, and ate some mac and cheese while I watched a movie in my room. Before walking into the hospital I had a decision to make. A difficult decision, but at least a choice. That same evening, I had no choice. Doctors are inherently wishy-washy. They will never tell you what to do exactly, but from all of my meetings at Dana Farber and MGH, it was clear that surgery (resulting in little functional loss) in order to avoid chemotherapy and radiation was not a realistic option, and therefore, surgery was not an option.
To use an analogy, it felt like I went from having two trains I could choose to ride, to instead having one of the trains taken out of commission, and having to hop on the other one (i.e. the chemo/radiation train) that was already leaving the station. I felt like a passenger to my own life decisions because there was really no decision to be made anymore…I felt powerless.
I am the type of person that likes to go all in, I like to take a shot at that glimmer of hope. For me, surgery with little functional loss and no further treatment was that glimmer of hope, and now it was gone. To choose surgery knowing what I have been told would be reckless, which is why I am moving forward with proton therapy and chemotherapy. Knowing the path I am taking doesn’t make it feel any better because in the end, I didn’t get to make the decision. Instead, for better or worse, circumstance, fate, and life made the decision. I know as things progress, I will find ways to have more ownership and control over my situation, but what really sucks about cancer is that to some extent, it is impossible to have full control. Having no choice in my treatment plan is just another sucky part to an already sucky situation.
One of the things I hate most about having to do chemo and radiation is that it feels like I am pushing the problem down the road instead of dealing with it head on. I am lucky that currently, my tumor is slow growing, and that I have a good shot that this therapy will buy me another 5, 10, 15, maybe even 20 years without a recurrence. With brain tumors though, particularly my type, they usually almost always recur. Years later I will likely have to deal with this all over again, and my best shot is that there will be medical advancements that can more directly treat my type of tumor. What scares me though is that there may not be those advancements, and at that time, I may have to do surgery simply to prevent a worse outcome, meaning I would likely lose movement on my right side. We cannot know the future though, and it is that uncertainty that makes this so difficult. Instead of going all in right now, I am essentially hoping I’ll be dealt an ace later down the road. But who knows? In the 11 years since my surgery there have been significant medical advancements. The likelihood that there will be even more by the time I have to do this again is very likely.
A lot of what I am writing may not seem like my usual upbeat, positive attitude…it may seem sad, and that is because it is. This is my raw emotions during a time when everything feels so uncertain. I’m writing this as I continue to process the reality that I have no decision, and what the next year of treatment may look like. In processing situations like this, sometimes the only thing that can help is time. Time to digest, and time to muster up the strength and courage to keep going. What is important though is to never get paralyzed by this processing and uncertainty, but eventually take the next step forward…step by step.
What I know from my past experiences, and what helps me keep moving forward is that inside I have the strength to get through this. I know I have the strength to stop speculating and focus on the present. I know I have the strength to find meaning in this entire situation that can seem so meaningless. I know I have the strength to keep my head up, to understand, and most importantly accept that life is uncertain, and move forward regardless of what may come my way over the next year. There will definitely be times throughout the next year where it will be extremely difficult to find the strength to keep going. That strength may be hidden under a lot of negative emotions, but that is what family is for. That is what friends are for, and this is what community is for. I am so blessed and privileged to have an amazing support network, and that is why I have hope. Because when everything might feel too hard to keep going, I know I have people to lean on.
“Grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace.” -The Serenity Prayer
That is my goal for this upcoming journey. To accept that while I cannot control my circumstance, I can control how I move forward and deal with the cancer. I can control how I accept the support of others, and in turn find ways to give back. I can strive to find meaning in this challenge, so that on the other side of this long journey, I emerge stronger, my relationships with others emerge stronger, and together we find ways to take control over this cancer…so that we no longer feel powerless.
Part 2: Moving Forward with Final Treatment Decisions
At this point, we already know that surgery is not possible. What still remained unclear was which chemotherapy I should receive, and whether I would like to receive my oncology care at MGH or Dana Farber. I had already decided that it was time for me to move into an adult clinic. While my doctors at Dana Farber/Children’s Hospital are amazing, and have supported me since my initial surgery when I was 12, it is now time to make the transition. First, the way staff and doctors interact with me is different. For example, in pediatric settings, the doctors have a habit to address my parents first, whereas in adult clinics, I am usually the main focus. Another reason for my decision was the environment where I receive my care. As a young adult, I am either the oldest in the pediatric clinics, or the youngest in the adult clinics. While I love watching kids play in the waiting room, I think I’d rather be in a setting with other adults who I can converse with. Finally, my type of tumor is usually only seen in adults, so most of the information we were receiving was coming from doctors in the adult clinics, so I felt more comfortable being seen by the doctors who deal with my type of tumor on a more frequent basis.
On Tuesday, January 20th, my parents and I (along with my personal care physician…who has been amazing throughout this process), went in for our final consult meeting at the neuro-oncology adult clinic at Dana Farber/Bringham and Women’s Hospital. I was once again meeting with one of the top experts in neuro-oncology, so I was eager to hear his views on my treatment. He began the conversation discussing all of the notes that had been written by each of the doctors I have seen from Children’s Hospital and MGH. He agreed with the neurosurgeons that surgery is not a feasible option. He began our conversation with the IDH1 mutation, not because it would impact any of our short-term treatment decisions, but that it could be important information to have down the road. Researchers are beginning to find IDH1 mutations in several different types of brain tumors, and are looking into developing treatments that specifically target cancer cells with this IDH1 mutation. Since chemo and radiation is only kicking the can down the road until another recurrence, these potential IDH1 therapies may be important future treatments. As I discussed before, unfortunately the molecular test revealed that I do not have this mutation. Similar to the neurosurgeon at MGH, the neuro-oncologist felt that I might still have a sub-form of the mutation that could be detected through extensive genetic sequencing of my old tumor tissue. I agreed that it will be important to know whether or not I have this mutation, so I gave consent to begin the sequencing process (which will take at least 2 months).
We then moved on to discuss chemotherapy options. The two choices in chemotherapy are PCV (a drug cocktail that has been used over the past 40 years), or Temozolomide (a newer oral chemo). Temodar (…a shorter name for Temozolomide) is being used more frequently to treat brain tumors because it has less side effects; however, there is still no long-term data to compare the outcomes of Temodar vs. PCV. If you remember the European level 1 randomized trial I mentioned in part 1 of this post, that study used PCV at that time (…in 1998) because it was the only chemo option available. So the big question was whether to stick to the book to what was done in the study (even though I do not fully fit into that study group), or to take our chances and try the newer oral chemo where little to no data exists on long-term outcomes. What made this decision even more difficult was that the neuro-oncologist at MGH was leaning towards PCV while the doctor I was seeing at Dana Farber was more inclined to use Temozolomide.
Since my tumor is poorly researched and already an outlier of existing research, I was once again at a crossroads to decide which treatment option to take with very little information to make a decision. Again, there is no crystal ball… If I decided to strictly follow the European study, I could fall on either side of the average time without another recurrence (about 14 years). If I decided to try the Temodar, it could have the same, better, or worse outcomes compared to PCV. There is just no way to know. The good news though is that since my tumor is still slow growing, all of my doctors are confident with my short term prognosis regardless of the chemotherapy I choose. Despite that short term security, I still wanted to give myself the most amount of time before another recurrence so that new treatments can be developed because that is my greatest source of hope for long-term survival.
I’ve mentioned before that doctors can be a bit wishy-washy in providing concrete recommendations. The best way to get as close to a recommendation as possible is to ask the doctor what they would do for their family. Most of the time they dodge this question, but sometimes they answer it. My personal care physician asked the neuro-oncologist what treatment he would give to his family, and he immediately said Temodar. Either treatment option comes with a lot of long-term uncertainty. Temodar can have worse long-term outcomes compared to PCV, but it can also potentially have even better results. As my personal care physician put it, “medicine is as much a science as it is an art.” If doctors only used treatments that had been supported by evidence, we would never have new drugs, therapies, and advancements in medicine.
I went home still wanting to think everything through. My biggest fear in choosing between these treatments was regret. The goal for undergoing chemotherapy and radiation is to buy me enough time so that newer therapies can be developed before I have another recurrence. With brain tumors like mine, there are no cures. They almost always recur, so I want to have as many years as I can get for newer therapies to be developed. The alternatives, either having to do surgery later on (resulting in likely paralysis), or my tumor evolving in aggressiveness are too scary to think about. But that doesn’t mean I don’t think about it, especially when having to make these treatment decisions. I hate that these decisions feel like a crapshoot, but that is the reality of where research and treatment is with my type of tumor. There is no way I can control what will happen in the future, so the only way to keep moving forward is to focus on what is in front of me right now.
I felt comfortable with the neuro-oncologist at Dana Farber, and his approach to recognize the evidence, but also use his extensive experience to push the envelope and make adjustments based on each patient’s unique circumstance. In my short meeting with him, I felt like I could trust him to be my point person for what is going to be a long journey ahead. I have thus decided to receive my oncology care at the adult neuro-oncology clinic at Dana Farber and take his recommendation to begin Temodar therapy.
Part 3: The Treatment Plan
For my treatment I will be followed at Dana Farber’s adult neuro-oncology clinic and receive my proton therapy at MGH. I sent an email to all of my doctors to inform them about my decision, and everything started moving forward extremely fast. That same day, I received a call from MGH to schedule my proton therapy preparation and treatment. I will be getting all of my preparation work completed Tuesday, January 27th (…more detail in a future blog post), and begin treatment Wednesday, February 4th. Coincidentally, it was around the same time in February of 2004 when I had my surgery to treat the original tumor.
A lot of things will be moving forward over the next two weeks to prepare for chemotherapy and radiation. As the treatment is about to begin, I will be sure to keep you all updated on the process, and continue to write about this journey living with brain cancer.
It has been quite a while since my last medical update because over the past month not a lot has moved forward, until now. In this update I will try to summarize the most recent progression in my medical situation. In addition, at the end of this post, I will provide some more detailed information for my medically inclined/interested friends (a.k.a. ESTers).
Over the past month I have been waiting for several medical results to come back to determine the next steps for treatment, including a functional MRI and molecular studies. The functional MRI (fMRI) is used to map out functional areas of the brain in relation to the tumor. This helps determine whether or not surgery is possible, and if so, what are the potential risks. I had my functional MRI on December 3rd where I performed various motor, speech, auditory, and memory activities while they took images of my brain. On December 24th, we received a 23-page report detailing the results of my scan (…I’ve included parts of the report below for my medically inclined friends). While I could understand parts of the report, I wanted to meet with the neurosurgeon as soon as possible to help interpret the results. In the meantime, we were still waiting for the battery of molecular and genetic studies on old tumor tissue that was removed during my surgery in 2004. These tests were being done to determine the characteristics of my tumor in order to get a better idea of what the potential outcomes and therapy options might be. While waiting to put together the appointments, I had another focal seizure on January 4th localized on my upper right side. I emailed my doctors, and luckily, both the neurosurgeon and my oncologist had the results back and were available to meet this past Thursday, January 8th.
I had grown accustomed to the “waiting game.” I had fallen into a blissful routine of catching up with family and friends, but on Thursday everything went from gear 1 to 20. We first met with my neurosurgeon through Dana Farber’s pediatric clinic. The good news from the fMRI report is that the tumor has not yet moved inside the functional areas of the motor cortex that controls movement on my right side. If it had moved inside this area, the tumor would have been considered inoperable. Instead, the tumor lies just at the margin of this area, making surgery potentially possible, but incredibly risky. The surgeon explained that if we decide to attempt surgery, she would use specialized real-time imaging techniques as well as perform the surgery while I am awake. This may sound pretty sci-fi and scary, but the brain has no pain nerves, so I would not feel anything. Surgeons perform awake operations when navigating near areas of the brain that control important functions (i.e. movement on my right side). Performing an awake surgery would allow my surgeon to test whether or not cutting into a certain area will cause permanent functional loss on my right side. If she found this was the case mid-surgery, then she would choose to abort the surgery.
We spent the next 45 minutes discussing the various risks associated with the surgery. What she made clear is that looking at the MRI scans over the course of several years shows significant tumor growth along the perimeter of where I had it previously removed. Waiting is not an option because if the tumor continues to grow, it can potentially move into the areas that control motor, speech, and cognitive functions. My surgeon said she would only consider surgery if it would make a significant difference in my treatment plan. In other words, she would only do surgery if it significantly improved my long-term prognosis, or if it meant I would not need additional therapy (i.e. chemo/radiation)…and that is where my oncologist comes in.
Immediately after my appointment with the neurosurgeon, I met with my oncologist. The good news from the molecular tests is that my new tumor is still most likely a low-grade oligodendroglioma. This is good because this type of tumor is slow-growing, whereas sometimes these tumors can evolve into a higher grade, more aggressive form of cancer that can be difficult to treat. The interesting (and slightly annoying) result from the molecular tests is that my tumor doesn’t fit into any usual box. When I was originally treated 11 years ago, Oligo tumors were very rarely found in children (…about 1-2% of pediatric tumors). We now know that my tumor is even more rare (…or let us say…unique). Genetically, my oligo tumor shows some characteristics of an adult tumor and some features of a pediatric tumor. This is important because usually cancer treatment is based on what treatments have previously worked best on a certain type of cancer in a certain age group (…documented in research and case studies). In regards to previous studies, I am both in the middle of the age groups (as a young adult), and in the middle of tumor types (as a mixed pediatric-adult oligo tumor). You can say that my tumor is a young adult, just like me. Unfortunately, there is very little to no clinical precedence for my situation, so the best we can do is develop plans and predicted outcomes from studies of adults (usually 40+ years old) who have had an oligo tumor.
Based on these studies, my oncologist recommended treating the tumor with a combination of chemotherapy and radiation. Unfortunately, there are no targeted chemotherapies for my type of tumor, so the chemo would be in the form of a pill I would take for 5 days within a 28 day cycle for 1 year. For the radiation, I would likely be a candidate for proton therapy over the course of 6 weeks, performed 5 times a week. During normal radiation, side effects usually occur due to radiation beams affecting normal brain tissue upon entry and exit . Proton therapy reduces potential side effects because the beam dies off after hitting the tumor, so it only affects healthy brain tissue upon entry. There are a lot of side effects with chemo and radiation, but the issue I need to take into consideration is the effect of radiation on reducing cognitive ability, particularly short-term/working memory (i.e. remembering tasks). I crudely joke that now I could potentially have an excuse for being really bad at remembering names…but I digress.
During our meeting with my oncologist, he still needed to consult with his colleagues in the adult brain tumor clinic at Bringham and Women’s Hospital to see if the option to perform surgery would change the treatment plan from an oncology standpoint. My Mom, Dad, and I thus left the hospital with a whole lot of information (…7 pages of notes worth), but still one big question of whether or not surgery would be an option worth considering.
The Big Decision:
The next day while on the greyhound bus to visit friends in New York, I received the answer to this looming question. The oncologists at Dana Farber concluded that if I can get the tumor fully removed during surgery (a GTR or Gross-Total Resection), I would not need any chemotherapy or radiation. However, if the tumor cannot be fully removed with surgery, I would still need a combination of chemo and radiation. Given the information from my doctors, I am now left with having to make a decision between two options:
Option 1: I attempt the surgery knowing that my surgeon may choose to abort the procedure if she thinks it will cause permanent functional loss on my right side.
Benefits: It has been found in studies of adults that a full resection of the tumor produces the best outcomes in terms of the amount of time before the cancer recurs. In addition, a full resection would let me avoid undergoing chemotherapy and radiation.
Risks: While doing an awake surgery can minimize the risk of permanent neurological deficits, I would still be at risk of a wide spectrum of functional weakness/loss. The surgery would very likely cause at least temporary paralysis on my right side (similar to my surgery in 2004). The degree of recovery cannot be fully predicted.
Option 2: I decide to not attempt surgery and begin radiation and chemotherapy treatment.
Benefits: I would avoid the risk of functional weakness or paralysis on my right side.
Risks: Chemo and radiation have a large list of side effects, some minor, others pretty serious. The severe side effects are relatively rare though. The most likely effect of radiation is a noticeable reduction in my short-term memory. To use an analogy, the cognitive deficits wouldn’t necessarily change what I would write a paper about, but how I would plan, structure, and write it.
I am thus at a cross-roads, where as my oncologist put it, “there is no wrong decision.” The goal for both options would be to potentially get rid of the tumor, or more likely maximize the amount of time I have before another recurrence (…called “disease-free survival”). This is a pretty good goal given that in 5-10 years there may be a lot more advanced treatments available if the tumor does come back. Therefore, the decision I need to make is based on what risks I am willing to take. The difficult part of this decision is there is no clear-cut answer….there is no crystal ball. The risks for both options lie on a spectrum. I could choose surgery and come out of it with very little to no side effects, or I could be left with significant functional weakness or loss on my right side. I have no idea how someone makes this decision, but what I do know is that before I decide, I need more information about the benefits and risks of both options…I need as many “facts” as I can get. That is where getting a second opinion comes into the picture.
Obtaining a 2nd Opinion:
I have heard from fellow cancer patients that sometimes getting a second opinion feels like they are questioning their current medical team. I too at times have similar feelings, but what I also know is how important it is to get another opinion. When I was 12, the “first opinion” my parents received was to wait and watch the tumor. My parents got a second opinion, and instead we decided to do surgery. In retrospect, if my parents had not searched for the second opinion, my tumor would have very likely spread, causing serious neurologic deficits, and potentially becoming fatal.
My medical team at Dana Farber is some of the best in the world, and I have 100% confidence in their work and the information they have provided me. In order to make a more informed decision though I am seeking a second opinion at Mass General Hospital. My doctors at Dana Farber have been incredibly open and supportive in providing support for this referral. I am very lucky to have an amazing personal care physician (where my mom works), who has helped arrange meetings with a neurosurgeon, oncologist, as well as the director of MGH’s proton therapy center (the first center in the U.S., and the only one in Boston).
Before I make any decisions, I am going to wait and see what this team of doctors at MGH recommend. If they recommend a different course of treatment compared to Dana Farber, then I will have to decide which institution I will like to get my treatment at. If on the other hand they recommend the same two options, I will at least have more information to make an informed decision that I feel comfortable moving ahead with.
Regardless of what I decide, my doctors have recommended that I start treatment no later than the end of January. Given the preparations involved with either surgery or radiation, I will need to make a decision within the next week. This may very well be one of the hardest decisions I will ever have to make in my life, but I am comforted knowing I have an incredible medical team and a loving and caring support network through my family, friends, and you all reading this blog. Whatever happens, it is going to be a long journey, but I am confident I’ll emerge even stronger on the other side.
Extra Medical Info (…for my medical geek friends):
Functional MRI Report (If you would like to see my brain light up like a Christmas tree): fMRI-Report
*Note the responses for when I tried to move my right toes (Figure 4). Due to my surgery in 2004, my right toes are paralyzed. However, as my brain developed, other parts tried to pick up the lost function (…pretty cool!)
Molecular study report from 2004 tissue sample:
- 1p/19q whole arm chromosomal co-deletion (characteristic of adult tumor)
- Combined loss of 1p and 19q is commonly found in adult patients with oligodendrogliomas, and is a common molecular signature for oligo tumors.
- Kids that have oligo tumors usually do not have this co-deletion.
- MGMT promoterunmethylated
- MGMT (O6-methylguanine-methyltransferase) promoter methylation occurs in the majority of adult oligo tumors, and is often positively correlated with 1p/19q loss.
- IDH1 mutation – negative (characteristic of pediatric tumor)
- IDH1 (isocitrate dehydrogenase 1) mutation has been found in many adult oligo tumors, and commonly associated with the 1p/19q deletion.
- Adults tend to have this mutation.
(***Because I have not yet asked my doctor’s permission to publicly mention them in this blog, I have not put down the names of the doctors I am seeing. If you would like to know the names of my doctors, please send me an email via the contact form)
“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live” -Stuart Scott ESPYS Speech
While most of you know that I am not one of the biggest followers of sports commentary, Stuart Scott’s perseverance to have lived every moment to the fullest is an inspiration for me. It is my goal that throughout my journey with cancer, I can muster that same perseverance. Thank you Stuart Scott for the inspiration.
My family and I at my favorite place in Bali. As we begin this new year, what gives me strength and hope is my family. They are the ones who continue to inspire me to push forward and accomplish my new year’s resolution – to open up to support and be vulnerable.